Saturday, March 29, 2008

Sebastian has had a better day than yesterday so that is good. He slept a lot but it seemed to be a much more peaceful sleep.

We are hoping to hear monday when he will be going back in for his next surgery, but we are told it will be this week.

Friday, March 28, 2008

Sebastian has had his hip surgery, the metal was removed and off to ICU he was sent. He did very well, that day and night were good for him, but it went very much downhill after that. He is in a lot of pain and having a tough time, thankfully we had a nurse we really like who knows him well and knew how bad he felt.

His j-tube has again migrated into his stomach (for the 4th time since feb. 12th 2008) and he is now awaiting a surgery date to have a permanant one placed. We had really not wanted to go to this step and neither had our pediatrician, but it is no longer a choice. Now even his medications into his stomach have him wretching, gagging and throwing up. Though we prefer to think it is the pain causing his stomach to not work, reality is that it is a progression of his mitochondrial disorder.

Right now he is listening to his i-pod in his special gel bed.

Thursday, March 20, 2008

the goings on

Happy Easter Long Weekend Everyone.....

It's been a busy Spring Break, poor B has had to come to the hospital 3 times so far, but he's done great and been good with Baby I. S had to have his J tube placed again yesterday, 3rd time in about a month, this tube is not going well for him....

S will be going in for his 9th hip surgery for the right hip next wednesday the 26th. Due to how bad his hip is looking it has been put in as emergency surgery. We are not certain he is up for this but it has to be done. This is not a great copy of the xray, but anyhow... The big metal has to come out as it has now almost pushed through the skin as well as it is causing him incredible pain. Another concern will be he will have extremely high risk of fracturing as they take it out and in the months afterwards.

B had a hockey tournament and they won all their games and played really well, he has another tournament starting in the morning so hoping they play as well and have fun. After this weekend his regular 2 hockey teams will be finished for this season. He has joined a 3 on 3 team for 3 months and lacrosse, which will be new for him. So he will still be keeping busy!!!

Baby I has been keeping busy with following the boys and all they are doing. She is enjoying her ballet school, they are preparing for their recital in June.

Friday, March 07, 2008

Finally an update...

After a long absence.... an update on what's going on around here.
It has been a tough couple months for sure; I think we are all exhausted and pretty much not sure where life is headed.

S started going downhill in January and by early Febuary we thought we might lose him. He is such a fighter through everything and especially the incredible pain he has from problems with his hip. From the pain, his stomach stopped emptying and a new tube was placed to by-pass the stomach. He did not wake up much during January and Febuary, he just pretty much shut down. He has been in and out of hospital and Canuck place Hospice and is heading back to canuck place Sunday with the hope they can get the pain more under control.

It has also been tough on B and baby I. They are troopers and adjust very well to whatever is going on. B's hockey is wrapping up for the season, we made sure he was able to be at his games, but missed a few weeks of practise and school.